Blood pressure disorders: pre-eclampsia and HELLP

Pregnant women routinely have their blood pressure monitored throughout their pregnancy. Doctors are on the lookout for symptoms of hypertensive (blood pressure) disorders that can sometimes develop during pregnancy. These include pre-eclampsia and HELLP syndrome.

Pre-eclampsia is a condition where women develop high blood pressure, fluid retention (oedema or swelling) and protein in their urine. While mild pre-eclampsia can be monitored with blood pressure and urine tests at regular antenatal appointments or by the GP, more serious cases need to be monitored in the hospital. Treatment focuses on lowering blood pressure but the only way to cure pre-eclampsia, if it is severe, is to deliver the baby. If it is not treated pre-eclampsia can lead to serious complications. Mild pre-eclampsia affects up to 5-10% of pregnancies, severe pre-eclampsia 1% of pregnancies*.

HELLP syndrome is a rare complication related to pre-eclampsia. HELLP syndrome is a combined blood clotting and liver disorder that can affect pregnant women. The letters in the name, HELLP, stand for each part of the condition' Haemolysis (red blood cells in the blood break down), EL (elevated or raised liver enzymes) and LP (low number of platelets in the blood, which affects the blood’s ability to clot). The only way to cure the condition is to deliver the baby. The main danger to the baby is if it is premature or if the mother becomes extremely ill. Acute fatty liver of pregnancy is another rare condition related to high blood pressure.

We interviewed several women who experienced severe pre-eclampsia or HELLP syndrome.

Symptoms

Doctors or midwives can pick up early signs of pre-eclampsia or HELLP syndrome through monitoring women’s blood pressure and testing for protein in their urine. Sometimes women will be monitored for a while because the longer the pregnancy can continue the better it is for the baby. But if symptoms become severe the baby needs to be delivered quickly for the sake of the mother’s health.

Julie is a research and performance manager for a local authority. She is married with one daughter. White British.

Yes, and obviously with me being with me being overdue the midwives came quite frequently just to see if anything was happening. And they booked me in for a standard induction on a certain date, saying, “Right if you’ve not had your baby by then, we’ll book you in, and you’ll go in on that day and, and things’ll proceed.

I think they must have come in about day five and they did the manual sweep to see if they could start things off, and they did all the routine tests of my blood pressure which had started to go up, just ever so slightly, but nothing significant. And at that point, I just felt heavily pregnant, didn’t feel anything wrong.

And then, one afternoon I was sat on a birthing ball in the living room and I just got all these horrendous lights coming in front of me and my head and I thought someone had hit me over the head, this severe pain, so I thought ooh I don’t feel very well and felt very sick. And I thought ooh I’ve gone into labour, because obviously I’ve never had a baby before. I had no idea other than physical pain. I didn’t know if these were just quite normal.

So I got my books out and rang the hospital and spoke to the midwives and they asked me to ring my community midwife and I rang her and she came out, took some bloods, did a urine test and just examined me and everything and took the bloods, ranging me later with the bloods from the hospital saying I was borderline having the starts of pre eclampsia. So she said, “You rest. And when I say rest, you rest. You know, you’ve got to be really careful.” And came in every day.

Then so, that started on the Thursday. On the Saturday I started with really severe headaches again and the, the visual disturbances were there pretty much all the time. So I felt very, very unwell. By then I couldn’t put shoes on my feet, because my feet were so swollen and I started to get pitting oedema on the legs. I mean I didn’t think my face looked swollen, but when they saw me, they were like, “Yes, you are, you are very swollen.” But I think that was then I felt that poorly I didn’t really, I wasn’t bothered by then.

So we got the pleasure of going to [hospital] Maternity Unit for the day where they could monitor [daughter] and make sure she was okay, monitor my blood pressure. They did, I had to do a twenty four hour urine collection over the weekend, for looking at the protein and my blood pressure all the time and it was just going up and up and up and they were like, “For now, you’re okay. You can go home.”

So we went home on the Saturday after being there for about nine hours, since my (or I) came home with the 24 hour collection and I was told to ring if I felt anything had changed overnight, and I had to go back in at 4 o’clock on the Sunday just for them just to see how I was again.

Sunday morning I got up, well I mean I can barely remember sort of the Sunday, Monday because it all just… I felt that ill. So I got up on the Sunday morning and I had to take all my jewellery off because my hands had really swollen. I mean I could see it at that point. And every time I moved I felt very dizzy and very, very unwell.

And I got a little bit of tummy ache. Not like labour pains, because we never got to that point. But I just felt, I didn’t feel right. So I rang the ward and they said, “You need to come in.”

So we got there, they did my blood pressure and I think it was something like 220/130 something. So they said at that point I was definitely not going to be going home [laughs].

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Profile Info

Age at interview:

32

Sex:

Female

Age at diagnosis:

31

Background:

Samantha is a pensions consultant. She is married with one daughter. White British.

I went to the Day Assessment Unit at our local hospital, for a check-up so that was at 28 weeks. My blood pressure was still high, even though I was on the medication, they checked protein in my urine was fine at the time but obviously I was having headaches and pain, so they asked me to come back later on in that week. At which point I was just 29 weeks.

And when I went back into the Day Assessment Unit at that point the, there was a lot of protein in my urine, and the headaches were worse, my blood pressure was higher, and the pain I had was worse and at that point they decided to admit me. For what they hoped would be a fairly lengthy stay in hospital controlling my blood pressure and you know, until the baby was born. I spent… They also gave me steroids at that point in case the baby was delivered early to help the lungs develop.

They kept me on a one to one, I was on the delivery suite at that stage because I needed the one to one care. So they were treating the, the high blood pressure basically and the hope was that that would reduce to a relatively normal level and I could just be put onto a ward for observation for a few weeks.

But unfortunately I had quite a few spikes in blood pressure, so I was admitted on a Friday, the Friday night, Saturday morning; I had quite a major spike in my blood pressure which they had to treat quite aggressively. It then sort of settled down a bit. I then had another major spike on the Sunday morning at which point my consultant said that if it happened again, they would probably have to deliver the baby.

No, sorry, I might have misled you, it was only at about 28 weeks that I developed the pain and because I had had a stay in hospital previously and I was given a number of warning signs to look out for and because I had started to develop that pain and the headaches was when I went back into the Day Assessment Unit for a check-up. And as I say, they, asked me to come back later in the week, which is when things started to really go pear shaped [laughs].

And how did you feel in between those two day. Did you, can you remember much about them?

Yes, I can. I had a couple of days where I felt fine, and I had a couple of days where I felt awful. But again I tried to, I think I tried to sort of put it down to, oh you know, millions of women have babies, you know, and everyone gets indigestion and, and heartburn and I’m sure it’s just that, and you know, I think I tried to convince myself that it was just a normal stage of pregnancy, and I just needed to get on with it, and actually on the day that I went into hospital I felt pretty, I felt pretty good. I did go downhill pretty quickly after that, but it was really swings and roundabouts. I had some, sometimes I felt absolutely fine and at other times I felt absolutely awful.

So going into hospital, did you have any expectations when you went in on that Friday I think you said it was.

Yes, it was. I thought I was going in for a check-up and actually I was all dressed to go to work and I, I kind of knew the routine by then, because I’d been in there a few times for check-ups so I knew they were going to check my blood pressure, I knew they were going to take blood. I knew they were going to ask for a urine sample. So we did all that and I sort of sat there, and I had my book, because I know that it takes a little while, and when the midwife checked my, my urine sample, and there was a, I think she said it was a plus 3 reading of protein which is like, I think is like the highest they check. I thought to myself then, okay this is bad. And she said to me, you know, “We’ll get the doctor to come and see you.&rdq

The women we spoke to who developed HELLP syndrome had high blood pressure and doctors also measured their liver functions. These women had their babies early.

Helen is a physiotherapist. She has one son and lives with her partner. This was her first pregnancy. White Australian.

I was having a completely normal pregnancy. I felt well. I was going to yoga, I was going swimming 2km a week, everything was completely normal. I was having a lovely time. And all the rest of it.

And I went for a routine 32 week GP appointment one morning, 8.30 in the morning and said, “Your blood pressure’s too high.” And I said, “Oh well, whatever.” Because I’ve had, I’ve never been regular at having my blood pressure taken because of something that happened back when I was at uni and so I always hate having my blood pressure taken. And so, I sort of brushed it off a bit, and said, to him, “You know, I’m sure it’s okay.” Or whatever. He was like, “I really want you to go into hospital.” And I was kind of like, “Oh that’s a bit extreme.” And he said, “Look, we’ll agree because you’re a physio, and I trust you. You can go to work, but I want you to take your blood pressure once an hour for the next three hours. I’m calling you at 12. If it’s still too high, we’re having this discussion again.” And I said, “Okay, that’s fine. Fair enough.”

So I went off to work and I took it for the next three hours and it was still very, very high, so we agreed that I’d go to the hospital. Which I did, and went to just the day assessment unit, where they did more monitoring of it. It was basically, it was still high, but borderline as to whether they’d medicate or not. So I think they said, if it was over a 150 on a 100 they’d definitely put me on medication. If it was well below that they wouldn’t bother. Mine was sitting pretty well bang on that. So they didn’t know quite what to do. So they took some bloods as well and basically said to me, “Look, we don’t know quite what to do with you. Come back on Monday, and we’ll see how things are then. Unless we call you and tell you that your bloods are off, and then we might ask you to come back in.” So that was fine.

So I came home and then I got a call the next morning, Friday morning, now saying, “Your liver function’s a bit funny. Can you come in?” And I said, “Fine.” So I went in and we pretty much had a repeat of what happened on the Thursday. Essentially, the same things all happened again, except they talked about admitting me, but then decided not to, because they said, “It’s the weekend; nothing’s going to happen over a weekend. Why bother putting you in hospital when we can’t do any tests and things. So you may as well go home.”

And the only thing they did that was different, was they did an ultra sound of Caleb just to make sure that his growth was okay, because they were suspecting pre eclampsia by then and so, apparently, their grown can be affected to they wanted to check that. But that was all completely normal, which was great. So I went home for the weekend. And had a pretty horrible weekend. I felt really, really uncomfortable. I just remember this tight pain kind of here, right under my boobs and trying to work out, you know, what that was, whether that was my liver being quite up high and that was the pain, and that’s what I thought it was, but God I was uncomfortable, and I couldn’t sleep and I just wanted it to be Monday, because I just wanted some kind of resolution. You know, this hanging around was terrible, because no one could decide what to do and it was horrible.

So I was quite relieved when Monday morning came and I went in again, and they said. I mean the blood pressure was still the same. They still didn’t know whether to medicate or not, because it was still borderline and I had no other symptoms of pre ecl

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Profile Info

Age at interview:

35

Sex:

Female

Age at diagnosis:

34

Background:

Kate is a teacher. This was her first pregnancy. She now lives with her partner and son. White British.

Well I had a model pregnancy. Barely even registered it [laughs]. No morning sickness, no nausea. No reactions to smells like I believe some women experience. I was exercising. I was going to the gym up until about 22 weeks I think it was. And it was quite straight forward and I was still working fulltime. And you know, I had the regular checks, and everything was all right. Really happy about everything, going very smoothly.

And, let me see. I got to, well, about 34 weeks and I had what I thought was indigestion. I woke up at night with pains between my ribs. And I thought, well this must be indigestion. There’s nothing else for it. But it was quite hard to breathe, and I had that twice in a week, but I didn’t even mention it to the midwife, because I assumed it was indigestion. I actually told her it [laughs] it was indigestion.

I had one episode of slightly high blood pressure, but the rest of it had been fine, and then I was told by the midwife that I was so low risk that she wouldn’t need to see me for another three weeks. So I thought oh wonderful. And then ten days later it all went horribly wrong.

I’d been out for a meal the day before. I’d been swimming that evening. I’d been tutoring as well. And on the way home, I was thinking about dinner, as pregnant women always think about their next meal, and I thought, I don’t feel hungry. And I thought, oh this is a bit odd. Didn’t think much of it, got home and didn’t feel right. Something I couldn’t put my finger on. You know your own body don’t you? You know when something’s not quite right. And, I went on the NHS Direct website and I’d felt a bit swollen, my ankles were larger than normal, slightly uncomfortable. My fingers were slightly tingly as well. And I went down the check list of pre eclampsia and I thought well, general feeling of being unwell, swelling, and I thought well that’s a couple of things ticked off.

So I texted the midwife, and I said, “I don’t feel very well. Feeling slightly swollen. Possible pre eclampsia?” And she didn’t reply for four days [laughs]. Which is a bit late by then. So I text the other midwife that I had a number for and she texted me back the next day. I didn’t want to call them because it was about 8 o’clock at night and I thought well, I’ll just sleep it off you know.

So I called my partner. At the time we weren’t living together and I said, “I don’t feel very well.” And he asked me if I wanted him to come round, and I thought oh no, I don’t want to bother you. But something said, yes. Just you know, get him round. And then I have a blood pressure monitor, just as well and I took it and it was extremely high. It was 191/113. Which is high, and I thought oh gosh this is bad.

And I took [partner], I took my partner’s blood pressure and that was fine. So I took mine again and it was still the same high reading and on the NHS Direct site it had also said high blood pressure.

So I called NHS Direct and I said, “I’ve got this, this, and this.” And they said, “You should call the hospital.” So I was due to go to have the baby at a maternity ward. I was going to have drug free [laughs] water birth, you know, how it goes. And they put me in contact with the, with another hospital, and I told the midwife exactly how I was feeling and I told her the reading on my blood pressure monitor and she said, “Well it must be faulty.” So I said, “I’m really sorry. I feel really stupid. Sorry to have bothered you.” And I thought right I’ll just go and sleep it off.

&

Delivering the baby

The women were closely monitored, and if their or their baby’s condition deteriorated, doctors decided that they needed to deliver the baby quickly. Sometimes women became ill very rapidly. Julie was overdue and had started to develop high blood pressure and headaches. She was monitored over a period of 2-3 days. Samantha started to develop high blood pressure when she was 24 weeks pregnant, her baby was born at 29 weeks.

Julie is a research and performance manager for a local authority. She is married with one daughter. White British.

Yes, on the Sunday night. So I still felt exceptionally unwell with this severe headache and visual disturbances. And of course my blood pressure just kept going up and up and up. They put me on fluid restriction and obviously every time I went to the loo I had do it in a pot so they could monitor what was coming in and out. I was strapped to the bed strapped to the bed with the monitoring equipment on. So I couldn’t really, it was quite how I thought it never would, because I was hoping for a natural water birth. I thought, I thought it was just going to all beautiful and lovely.

So I had all the monitoring on. Wasn’t allowed to go anywhere unless it was to the toilet so I really, you see I wasn’t allowed to eat or anything, just 100 mls of water an hour that was it, that was all I was allowed.

So I got induced probably about 9 o’clockish - 10. Between 9-10. And then probably at about half past eleven at night I just thought phew I have a really bad back ache. Really horrendous back ache. So I thought, I got out of bed, I’ve got to get out of bed, because it was… I felt like someone had just kicked my spine round the back. It was horrendous. So I sort of got up and sat on the birthing ball that they’d eh, left for me.

I sat on that and then all I could feel, it was just contraction after contraction after contraction. They were literally there. I’d gone from absolutely nothing to full on contractions within probably an hour and a half.

So they came and examined me again and gave me some gas and air because it was just, well the pain, well I’ve never felt anything like that before. Obviously I was still monitoring and everything, but I hadn’t progressed. I think I’d gone like 1 cm and nothing was happening. So they were like, “Right, well we’ve got a long way to go. But obviously see how you go. Just try and relax. Try and have some sleep.” But it was getting, the contractions were coming faster and faster and faster. And obviously as that was building up, so was my blood pressure. It was getting higher and higher and higher. And I just felt like I were on a different planet.

I’m still getting little sketches bits of information coming back to me, because I was just so out of it and they gave me some Labetalol I think it was called to bring my blood pressure down. Which, it did work, it brought it down, but by then, I think I’d sort of gone to a different level. I mean all I kept saying is, “I want to go to sleep.” Because I felt that poorly I just wanted to go to sleep. And they were all like, “No come on, you’re all right. You know, we want to get this baby out.” And then they tried to come and cannulate because they obviously knew something was, something was kicking off but they didn’t say anything to me, they were just very calm, and very relaxed, saying, “You know, we’re monitoring you.” Because I knew my blood pressure wasn’t right. But at that point everything else. Yes, we weren’t progressing ready to deliver, but we were, knew everything was, you know, baby was okay.

They tried to come and cannulate me but at that point I started to shut down, so they couldn’t get anything in me. So I ended up with probably, well my arms were black and blue, because they really tried bless them. I felt quite guilty because there was just nothing, they couldn’t go anywhere.

Then they still kept monitoring my blood pressure and baby. But my blood pressure started to come back up again even though I’d had Labetalol it was still, it was, you know, obviously I just needed to have the baby there and then.

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Profile Info

Age at interview:

32

Sex:

Female

Age at diagnosis:

31

Background:

Samantha is a pensions consultant. She is married with one daughter. White British.

So we had an emergency caesarean. From, I think from the time of the really high blood pressure reading until my daughter being delivered was probably about two hours. But that was only because they very kindly waited for my husband. It was getting to a stage where they were, unfortunately he got stuck in traffic, but it was getting to a stage where they were going to have to just go ahead and do it. But luckily he arrived just in time, and he arrived, they threw some scrubs at him, and we literally went straight into theatre, with all the usual sort of paraphernalia that happens with a Caesarean. In the time that we were waiting for my husband to arrive we obviously had a, the anaesthetist come and talk to me.

And what about you and your health over that weekend. Did you feel, I mean you described sort of being in denial almost, but were you frightened? Were you concerned?

No, I, even when I had these, the really bad spikes in blood pressure, you know, because, because the, any time it happened my consultant was here straight away, saying, this is, blah, blah, blah, blah. “This is what we’re going to do.” I don’t, I never felt scared at all. The only time I felt really scared was when sorry, even at the stage, sorry I’m rambling a bit. Even at the stage where my consultant said to me, “We’re going to have to deliver the baby.” I didn’t feel scared then. I felt really scared when the anaesthetist came to speak to me. Because obviously they have to say everything like, you know, “We’re going to be putting this in your back and blah, blah, blah, blah. And there’s a one in five thousand chance that this could happen, and that could happen and that sort of thing.” And all of a sudden you’re having lots of forms shoved at you to sign, and you know, because it was an emergency situation it was all happening quite quickly, and that’s when I got quite scared and actually when they wheeled me down to theatre and I was sitting on the edge of the bed when they were getting ready to put all the things into my back, I was, I was physically shaking, and I’ve never felt like that before. I was physically shaking. I was crying. And I think I was scared, but then I thought to myself, well if I don’t calm down, they’re not going to be able to put in the epidural and spinal block and all those sorts of things, and that actually made me worse. But then even in theatre when I don’t think I felt it at the time, but when I look back on it now, everything was such a well-oiled machine. You know, no one was in there that didn’t need to be in there. Everyone that needed to be in there, came in there at the time they needed to be there, they weren’t just hanging around and they obviously do so many of them, but it was, when I look back on it, it was, yes, it was so well organised. But it was just incredibly scary, because I’ve, I’ve never spent any time in hospital, never had an operation, and I remember saying to my husband, “Am I going to be okay?” And he bless him was trying to, at his best to just be sort of jolly and make it feel a lot less scary than it was actually was.

But I think, yes, I think it was when things started to happen very quickly. While things were sort of, you know, going along quite slowly, I was quite happy, but when it all started happening very quickly. Lots of people coming in and talking to me, lots of things to be signed. That’s when I really got scared.

And you were awake during the delivery were you?

Yes.

Helen was monitored for a few days as her blood pressure was borderline, before she was admitted to hospital where doctors diagnosed HELLP syndrome. Her baby was delivered early, just under 33 weeks gestation.

Helen is a physiotherapist. She has one son and lives with her partner. This was her first pregnancy. White Australian.

And then we just, the rest of that day, I think, we were just completely shell shocked. We just had a parade of, you know, anaesthetists, neonatal specialists, just every single specialist coming in and giving us information that I’m sure didn’t sink it at the time at all, and we just, you know, we were flabbergasted by all these people coming in and out and everything that was going on and all of the rest of it, and it’s really funny actually.

I look at, we have photos from that day, and like one of the anaesthetists came in and he, [husband] was all dressed up in the blues to go into surgery, and like there’s this photo of us and we’re both smiling about this day, and I just look back at it now, and think how were we smiling? [Laughs]. And we’re just, I think we were just shell shocked. We just had no idea of what had hit us, you know, it was so far from what we’d anticipated for the birth of our child. It was just bizarre.

So yes, we had all that, and it took a lot longer than what they thought. They sort of wanted me in surgery as quickly as possible, but basically my platelets were very low and they wanted to know just how low, before they took me into surgery. They’d already pretty well decided that they had to do a general anaesthetic rather than an epidural because of the low platelets, but they wanted to know exactly how low before they went in and basically the lab lost the result, so they had to redo it. So it all dragged on until the afternoon, basically.

So yes, and then, and everything was fine. I mean everyone was pretty relaxed. [Son] was being monitored and stuff and at one stage I think his heart rate had just started to slow and we could tell that they were starting to get a bit panicky that these results hadn’t come back, and anyway, they eventually decided to just go ahead anyway, I think. And so, we went into the theatre, which again we were just surrounded by people and, and all the rest of it. And so then, yes, then they knocked me out and did it, and which was weird. Those drugs are so powerful I never felt any… I felt it was just bizarre. I was saying some… I can remember some of the things I was saying. They were strange and I was just off my trolley, but anyway [laughs].

And I can remember coming round and we were in high dependency by then, and I can remember waking up and [son] was in my left arm. I can remember holding him. [Husband] said I was off my trolley and just completely woozy, but I do have a memory of him being in my arms, which is a really nice thing to have, and then I’ve got no memory of kind of the rest of that day, and the next few days are really, really hazy because I had to stay in the high dependency unit, because I had to have some very strong drug I think to get my blood pressure back down, so I couldn’t go and see [son] for about two days. And I was just in this high dependency bed.

If the baby has to be delivered several weeks before the expected birth date, women may feel emotionally unprepared for birth. At 36 weeks, Kate developed high blood pressure and severe pains in her chest and she went to her local hospital where her baby had to be delivered during the early hours of the morning by emergency caesarean. The suddenness of the birth left her feeling “just completely mind blown.” Often women didn’t realise how seriously ill they were.

Kate is a teacher. This was her first pregnancy. She now lives with her partner and son. White British.

And yes, I had to go and have an emergency C Section. But the consultant didn’t seem to think that it was an emergency as such. It wasn’t desperate. But I was just wondering why they weren’t helping me and taking the pain away [laughs].

You know, I wasn’t ready. I wasn’t mentally prepared. I certainly wasn’t emotionally prepared. Luckily I’d had some time to sort out a moses basket and some clothes and nappies, but that was what the last four weeks were for. For reading the books. For doing some research. For decorating the nursery, you know, getting it all set up. That was going to be the joyous moment of preparing. And that was all taken away from me, I suppose. Well from us.

But so, I went into the theatre, just completely mind blown. And then the next minute I heard a cry and the doctor said, “Well he’s fine.” And I found that I couldn’t really sit up. So they cleaned him up and then they, they put him next to me. I couldn’t really see him. I was like this. And so we were together for about fifteen, twenty minutes. This tiny little boy. I was expecting a nine pounder [laughs] and he was only five pounds.

So we had a little boy and he was fine. He just needed steroids for his lungs and a feeding tube a bit later.

And then it all went a bit blurry, and I didn’t know it, but I’d gone very yellow. I must have been jaundiced, and I don’t remember a lot about it from then on. I just remember lots of movement and fuss and the baby was taken away from me, and then I was in an ambulance, because I had to get transferred to the A & E… and it was very bumpy. I remember that.

I didn’t really understand what was happening. And then I was in Intensive Care for two days. Obviously kept on drugs , with my catheter [laughs] and I had wires in my arms and my legs, because they ran out of space in my wrists. So they had to go through my legs. They took my blood pressure every fifteen minutes. It was just being monitored. I just remember hearing the beeps of the machines constantly.

Yes, so that was that for two days. But I was better than some people. I mean the woman next to me was in a coma, so, [laughs] she wasn’t much fun. And then I was transferred to high dependency and I was allowed my partner to visit and a friend. Sorry can I have a tissue? I’ll get some kitchen towel. I should have been armed with a tissue shouldn’t I?

In some cases, where they had to be delivered early to save their mothers life, babies needed to spend time in special care. Sometimes, if clinicians are aware that the mother’s condition may lead to a premature birth, they are able to prepare parents for their baby needing to be in special care (SCBU). When she was admitted to hospital doctors came to talk to Samantha and her husband about what would happen if their daughter was born at 29 weeks gestation.

Michael is a website manager. He and his partner were expecting their first child. White Australian.

A few days before that, we had been to see some of the doctors in the hospital and one of the doctors who was a young doctor, she was about 30 years of age and she was talking, and she was talking about a possibility that we might have to have our baby earlier than normal. And we were like, okay that’s interesting. And she’d sort of explained to us that, she was born at 32 weeks herself and so part of me was sort of feeling, okay we’re almost up to 33 weeks now, and here’s you know, a well-educated, attractive doctor, whose obviously done really, really well for herself, she was born at 32 weeks and it hasn’t prevented her from doing anything at all. So that had actually sort of, that was in the back of my mind, thinking, okay there mustn’t be too much wrong with being born at 32/33 weeks. So there was that.

And I think we’d also had a discussion with a few other people, some friends who had had a baby earlier last year, also said that when we got past I think the 31 or 30 week mark, “Ooh that’s a major milestone.” I was like, “Really, why is that?” And they said, “Most of the organs are probably formed by that stage, so… “I obviously remembered that when we were in there being told we were about to have a baby in a couple of hours. So I was thinking that things should be okay at being born at 32/33 weeks.

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Profile Info

Age at interview:

32

Sex:

Female

Age at diagnosis:

31

Background:

Samantha is a pensions consultant. She is married with one daughter. White British.

And what did the paediatrician tell you? What sort of information did they give you when they came to talk to you?

They were very good actually. They told us about, you know, obviously they can’t speak in specifics until a baby’s born, but they, they gave us information about a baby born at 29 weeks gestation, you know, the main concern that we have is for the lungs. I’d had steroids already to already to address, you know, to certainly try and address that issue. They explained to us about some of the likely medication and machinery that, that you’d probably have to go on and you know, how they would sort of deal, deal with the baby in theatre and then take her away and that sort of thing. So, and actually that was really good, because when, I didn’t see her for quite a while, because they wouldn’t let me off of the delivery suite. But when my husband went upstairs and they were using terms like, ‘oh this is the CPAP machine’, he knew what that was and why they were using it. He already knew that and although it was still a big shock for him to see, you know, our daughter in that sort of situation, he did understand what everything was, and why it was there. So I’m really glad that we had someone come and speak to us actually, because, I would, I think otherwise I would have just been completely freaked out and you know, what’s going on, sort of thing. But because they’d talked to us about what you know, a baby at 29 weeks gestations is generally what their condition generally is, it wasn’t such a shock.

And actually the way they talked to us as well was, it was quite matter of, not matter of fact, but because they were able to say, “Okay, in the, if, for a baby at 29 gestation this is generally, these are generally what the problems were, are.” It felt like, oh well they obviously know what they’re doing, so it didn’t feel so scary I think. And luckily she was quite a text book case as well. She didn’t have any very major issues other than her prematurity and yes, I just, it just felt really comfortable that everything was going to be okay [laughs].

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Profile Info

Age at interview:

32

Sex:

Female

Age at diagnosis:

31

Background:

Samantha is a pensions consultant. She is married with one daughter. White British.

She was born at quarter past eleven and I wasn’t able to go and see her until half past four. They wouldn’t let me off the ward because my blood pressure was still bad. When they eventually did let me off the ward, I had to go with a nurse, and my husband obviously, and I was only there for ten minutes. So that was a very, it was really difficult actually because I was still on quite a lot of medication. I was, my hormones were all over the place and I was very emotional. And then obviously, they sort of wheel you into special care which is, you know, quite a scary place the first time you go in there, when you don’t know what all the beeps are and what all the machines do and that sort of thing.

And, you know, they sort of said, you know, “This is your daughter.” And it was really difficult to see her actually, because you know, she had lots of things going into her, she had a mask on her face. So I couldn’t really see what she looked like. She her skin was very translucent so you could see, you know, the veins and that sort of thing, and obviously with the lungs being a problem area, it was obvious that it was really difficult for her breathing. And I think that, yes, that quite upset me at the time, and the fact that I could only stay for ten minutes as well, upset me quite a lot as well. And one of the other things that I sort of feel a bit cheated by is, because I was on a lot of medication I have very hazy recollection of that day. And I have to ask my husband.

Every so often something will occur to me, and I will speak to another friend whose got a baby and I’ll sort of say to him, you know, “When you first went up there, what happened here? And when did they come and talk to you, and that sort of thing? Because I can’t remember a lot of things and again, you know, I’d always just had in my head that we would have a baby, you know, and she’d be given to us or he would be given to us and we’d kind of have to get on with it, and I just, I wasn’t prepared emotionally at all for, for what was going to happen.

Often the mothers who had experienced hypertensive disorders were discharged before their babies. The daily travelling to the hospital and spending hours at their baby’s cot-side was very tiring. Especially as many women were recovering from surgery or severe illness themselves. Some talked about the difficulties of transport, as they often could not drive after surgery. Samantha, whose daughter was born at 29 weeks, took cabs for a few days and then felt strong enough to go on the bus.

Helen is a physiotherapist. She has one son and lives with her partner. This was her first pregnancy. White Australian.

But yes, so then I got discharged and go to come home, which was fantastic. I’ve never been so happy to see this couch in my life. And then, so that was sort of the next phase of two weeks of going in to see him. He was well the whole time, which was really, really good. He was on, he sort of had a bit of oxygen and a heated mattress. I think it was about five days after he was born, and then after that, it was essentially nothing, other than he needed to develop a sucking reflex and to be able to eat for himself. So that, that was really good that he was healthy. And so yes, so we just had the exhaustion of going to and from the hospital every day, sitting in that horrible institution kind of room all the time, and that was exhausting. And, and we also fiddled with that as to like what was the best way to work this again, you know. Because you feel like you want to be there all the time, because you’re the child’s parent, and you really want to be there and all the rest of it. But then you think, what am I doing here, you know, like he’s asleep half the time. There’s no point me standing here, watching him sleep when I need to rest. You know, I’ve physically been through a fair bit and this child’s going to come home to me, and if I’m useless when he comes home what’s the point. So yes, so we sort of I think eventually decided to kind of go in for a reasonable chunk of the day, but then come at a reasonable hour and not feel like we had to go back and stuff like that. And again, I think there were some nurses that were better about then than others. Some made you feel like, oh you’re not coming back for a night time feed, you know, and all that. Well no I’m not [laughs] I’m going to sleep while I can, thanks very much.

Helen, whose baby was in special care for three weeks, decided she needed to be well enough to care for her baby when he did come home, so she spent some of the day at the hospital with her son but not all of it. Making use of the facilities in the parent’s room helped to make her time visiting the hospital less tiring. The night before their baby came home Samantha and her husband stayed in a flat next to the special care unit which was especially for parents.

Follow up and future pregnancies

After experiencing a blood pressure disorder in one pregnancy, some women were pleased to have the opportunity to discuss with doctors future pregnancies and the risks of developing the disorder again. Helen had a follow up appointment with a professor of medicine who explained to her the chances of her developing HELLP syndrome again. Samantha, who had pre-eclampsia, was grateful that the consultant invited her to come back and talk to her if she was considering another pregnancy.

Julie is a research and performance manager for a local authority. She is married with one daughter. White British.

And have you thought more about other children? I mean she’s still quite little, but have you…?

Yes, yes, we are talking about it now. Which is something that’s, again it’s took me two years, because I mean, I always wanted children close together. I always wanted two close together, but after the first episode, I was just like never, ever again, because of what had happened to me, and all the midwives kept saying to me, “Don’t let it put you off.” And I was like, “How can this not put you off?” How can it not? You know, but now I just think they would just monitor me like a hawk and I know they would. Not that I particularly want that, because it sort of takes a lot of the, the naturalness and the sort of letting your body do what it needs to do. But at the same time I know that they would totally monitor me this time. Not that didn’t before. Because they did. But I mean me and my husband one of our main things, is why did they not induce us earlier? And why did we have to wait until we got to the critical point, rather than if it started on the Thursday why couldn’t I have been induced on the Friday? Rather than having to go, for things to escalate to the point where it was horrendous, when if I had it done on the Thursday I was still, oh I was still at point where I was okay. I wasn’t well, but I was all right, and things might have been very different. They might not have been. But they might have been.

So I think it impacted on us for a long time, the thought, I mean I think if I’d found out I was pregnant I think that would have been the end of me. I think it would have just destroyed me, because I was so frightened, whereas now, I just think, yes, I would be quite happy now. I’d be more than happy.

Yes.

Because I think in my mind I’ve put things to bed so to speak. I think, yes, because I talk about it, and like getting involved in this and the pre eclampsia thing. I think that really works for me.

Oh I’m trying to think. I think it was about three months. It, I was for the first week that I was discharged, I had to see a midwife every day, and to have my blood pressure checked after a week the midwife discharged me and I had to go to my GP four weeks after that to check, to have a check and then I was going every four weeks, and at about three months they were happy, you know, that my blood pressure was pretty stable. And took me off medication. I have had it checked a couple of times since, and its, its generally, generally fine. It’s slightly on the high side but it doesn’t need medicating.

Okay and have you had any follow ups at the hospital?

No I haven’t. What, when I was discharged my consultant said to me, that were we, would we consider having any other children, which at the time I had no idea really and she said to me, “You know, before you even consider having another child, have your GP refer you back to me and we can, you know, monitor you, from the very, you know, from the very early stages of conception and so as to try and…” I suppose if I have a problem with the blood pressure to, to try and tackle that at earlier stage. So that if I did develop pre eclampsia again, you know, hopefully it would be at a much later stage. Because I think, from my understanding is that I, that its usually something that about quite later on in pregnancy and I was only 29 weeks gestation.

I had my six week post natal check. Which was fairly kind of, I guess perfunctory, you know, she sort of said, “Are you okay?” And I said, “Yes, I’m fine,” [laughs]. So there wasn’t a lot of sort of delving into what had happened and why and that sort of thing. Yes, there hasn’t, there hasn’t really been a lot of follow up for me, at all, but you know, like I said, I do feel that if I wanted to, you know, I can go back, I can go back to the, to the consultant and discuss.